jenkijunki Posted December 30, 2018 Share Posted December 30, 2018 Hi All, Happy New Year. I had a very bad relapse 4 years ago and am now slowly getting better. I had a very difficult time getting quality CBT in my area. It took 3 and 1/2 years to see someone who had experience delivering ERP. I saw two people before her which were only helpful in the sense that I had someone to talk to, but provided no relief from my OCD. I applied to my CCG to be treated at CADAT. My GP referred me to several secondary care services which all turned me down. I made about 30 phone calls, 50 something emails, tried to find a local advocate and even tried to get advocacy through OCD UK. It was a nightmare. (I kept a log of all my emails, etc.) I'm am thankfully doing much better, still a long way to go. I feel really hurt and let down that it was such fight to get treatment and am trying to decide if I should further pursue complaint with the CCG or let it go. I don't want it to happen to other people looking for help. It was an incredibly dark time. I felt very suicidal with my OCD and am lucky enough to have a very supportive husband, a few good friends I could talk to and used these forums. (I haven't been on them lately as I was hurt that I didn't get much help from the advocacy service) The fight for care made my OCD even worse. Part of me feels like I should make my voice heard but the another part of me is saying "move on". I know there are others on this forum that have had to go through very similar struggles to find the right care... Have you advocated or complained about your experience? Thanks for your advice, Jennifer. Link to comment
Angst Posted December 30, 2018 Share Posted December 30, 2018 What do you want from CCG? You say that it is to ensure that others do not experience similar things. This is vague. You need to specify what you want. This is the key to all complaints. In my life I have made complaints, had complaints made against me and adjudicated in complaints. What would be your ideal outcome? Link to comment
jenkijunki Posted December 30, 2018 Author Share Posted December 30, 2018 Spoiler Hi. That is a good question. Part of me wants to "be heard". I feel angry that they messed me about so badly. I also want the system to be much clearer for the people who work there and for people trying to access specialist services through the CCG. The truth is, no one really knew how to deal with the request that I made to be treated elsewhere. Link to comment
Angst Posted December 30, 2018 Share Posted December 30, 2018 So you want a clearer system for referral purposes and staff trained in these systems. And an apology for being messed about. It strikes me that these are achievable goals. I really understand about the emotional turmoil in getting referral. I started trying to be re referred to CADAT but my heart was not in the battle. Though some assstance was offered. Those of us with OCD and I think other mental health problems are already feeling pretty emotional and having to fight for appropriate therapy can be exhausting. I feel it. Complaints might work in some instances. But there are by definition individual attempts to improve situations. You could proceed with your complaint but also use broader political strategies to improve the situation by campaigning through a charity for improved access, lobbying your MP and so forth. Link to comment
jenkijunki Posted December 31, 2018 Author Share Posted December 31, 2018 That's great advice. Thank you! Link to comment
Olivia 1234 Posted January 6, 2019 Share Posted January 6, 2019 I really feel for you, it's so hard to get the right help especially when you're already not feeling great. It's so sad that accessing treatment is such a minefield. I've also had bad experiences but am trying to get help again. I feel like there is no point trying but I guess its worth a shot. Have you looked at the nice guidelines for OCD. You could always try asking for a referral. Based on your experience it may be worth speaking to PALs. I don't know why they have to make it so impossible for those of us that are already struggling. Hope you can get some help Link to comment
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